Designing a Culturally Tailored Formal Care Decision-Making Intervention for African American Dementia Dyads and Families

项目摘要/摘要 非裔美国人(AA)老年人患阿尔茨海默病和相关疾病的风险更高 痴呆症(ADRD)与非拉丁裔白人老年人相比，这增加了 这个种族群体的照顾者。再生障碍性贫血照顾者主要是再生障碍性贫血患者的女儿 (AA PLWD)。这些成年女儿和她们的家人必须为她们的再生障碍性贫血做出正式的照顾决定 PLWD，这与健康差距有关。这些健康差异导致再障PLWD经历 发病率更高，生活质量更差。没有专门针对指导AA的结构化计划 父母-成年女儿痴呆症二人组和家庭对再生障碍性痴呆的正式护理决策过程， 在使用正式护理之前，AA照顾者往往会用尽非正式的照顾来源。我的初选 对AA痴呆症二联体(即AA PLWD及其AA照顾者)的研究发现，AA非配偶 (主要是成年女儿)痴呆症两人的生活质量都比再生障碍性贫血的两个成员都差 配偶照顾者痴呆症二人组，支持我们对AA成年女儿照顾者的关注。此外，AA 照顾者发现，缺乏正规护理的文化定制是AA PLWD使用和期望的障碍 在为再障PLWD做出正式护理决定时，更多的家庭参与。与国家研究所保持一致 在Aging的行为和社会科学高优先级痴呆症照顾者研究中，K23奖的目标是 为了：1)检查对正式护理决策的影响(即行为、社会文化和环境)- AA PLWD及其成年女儿照顾者的制作过程和生活质量，2)描述 AA父母-成年女儿痴呆二联体成员的决策过程影响当前和 未来AA PLWD的正式护理使用，并探索这些过程如何影响两者的生活质量 这些二联体的成员，以及3)设计和测试针对AA父母-成人的原型干预的可行性 女儿痴呆症夫妇和家庭，使他们能够制定量身定制的战略，以支持正规护理 AA PLWD的决策过程。作为一名具有ADRD专业知识的临床医生，我在此基础上进行了培训 护理，我将：1)发展多学科决策模型方面的专业知识，以适应 在AA痴呆症夫妇和家庭中进行与文化相关的研究，2)获得分析技能 用于干预开发的定量、定性和混合方法二元数据，以及3)获得专业知识 使用干预映射和设计思维来开发、实施和评估 干预研究。我组建了一支优秀的导师团队(赫本、鲍威尔和莱昂斯博士)， 顾问(惠特拉奇博士、邓巴博士、希金斯博士和耶格尔博士)。K23奖将为我提供必要的 基金会成为一名独立的护士科学家，致力于改善再障痴呆症的生活质量 双胞胎和家庭，这与NIA的使命理想地一致，即“了解健康差距并发展 改善不同人群中老年人健康状况的战略。

PROJECT SUMMARY/ABSTRACT African American (AA) older adults have a greater risk of developing Alzheimer's disease and related dementias (ADRD) when compared to non-Latinx White older adults, which increases the number of caregivers for this racial group. AA caregivers are predominantly daughters of AA persons living with ADRD (AA PLWDs). These adult daughters and their families must navigate formal care decisions for their AA PLWDs, which have associated health disparities. These health disparities result in AA PLWDs experiencing greater morbidity and worse quality of life. There are no structured programs specifically aimed at guiding AA parent-adult daughter dementia dyads' and families' formal care decision-making processes for AA PLWDs, and AA caregivers tend to exhaust informal caregiving sources before using formal care. My preliminary research focused on AA dementia dyads (i.e., AA PLWDs and their AA caregivers) found that AA non-spouse (primarily adult daughters) dementia dyads both experienced worse quality of life than both members of AA spouse caregiver dementia dyads, supporting our focus on AA adult daughter caregivers. In addition, AA caregivers identified a lack of cultural tailoring of formal care as a barrier for use by AA PLWDs and desired more family involvement when making formal care decisions for AA PLWDs. Aligned with the National Institute of Aging's Behavioral and Social Science high-priority dementia caregiver research, the K23 award aims are to: 1) examine the influences (i.e., behavioral, sociocultural, and environmental) on the formal care decision- making process and the quality of life of AA PLWDs and their AA adult daughter caregivers, 2) describe the decision-making processes of members of AA parent-adult daughter dementia dyads that affect current and future formal care use for AA PLWDs and explore how these processes influence the quality of life of both members of these dyads, and 3) design and test the feasibility of a prototype intervention for AA parent-adult daughter dementia dyads and families to enable them to develop tailored strategies to support the formal care decision-making process for AA PLWDs. Building on my training as a clinician with expertise in ADRD caregiving, I will: 1) develop expertise in multidisciplinary decision-making models that can be adapted to conduct culturally-relevant research within AA dementia dyads and families, 2) acquire skills in analyzing quantitative, qualitative, and mixed-methods dyadic data for intervention development, and 3) obtain expertise using intervention mapping and design thinking for the development, implementation, and evaluation of intervention studies. I have assembled an excellent team of mentors (Drs. Hepburn, Powell, and Lyons) and consultants (Drs. Whitlatch, Dunbar, Higgins, and Yeager). The K23 award will provide me with the necessary foundation to become an independent nurse scientist dedicated to improving the quality of life of AA dementia dyads and families, which ideally aligns with NIA's mission to “understand health disparities and develop strategies to improve the health status of older adults in diverse populations.”